Primary care is the everyday health-related care and community support provided through a health care professional such as a doctor, nurse, pharmacist or physiotherapist. Regular visits with health care professionals are critical and ensure preventive care, maintaining health and wellness, as well as timely management of common and preventable secondary health complications such as pressure sores, urinary tract infections and respiratory problems.
Unfortunately, research shows that most family practices do not serve the needs of patients with spinal cord injuries well. Family physicians often lack the specific expertise necessary to provide optimal primary health care services for this population and may not be familiar with the healthcare resources to support them in understanding specific health care issues that affect people with SCI.
ONF is developing projects in primary care to understand models of care and build capacity that will work in Ontario communities. It is expected that these projects will lead to better management of complex chronic conditions for those living with SCI and will ultimately reduce emergency care visits, hospitalization costs, as well as individual pain and suffering and improve quality of life.
In November 2016, an ONF-funded summit will explore SCI community care from the perspective of primary care physicians and what they need to support people with SCI to effectively manage their ongoing health care issues, allowing them to live healthy and productive lives in their communities. An invitation-only event, this is the first primary care summit including healthcare providers, policy makers and those living with SCI to focus on SCI, outcomes and learnings from the summit will be broadly shared in early 2017.
ONF funded projects
Major activities that ONF has supported in this area include:
Centre for Family Medicine Health Team, Kitchener, Ontario
The Centre for Family Medicine established a fully accessible Mobility Clinic in 2010. The aim of the Centre? To increase access to multidisciplinary primary care for people with mobility impairments including neurological conditions such as spinal cord injury (SCI), multiple sclerosis and musculo-skeletal conditions caused by severe arthritis and extreme obesity.
Historically, access to quality primary care has been a challenge for this group of people. Physical barriers, limited care provider knowledge about specific disabilities and their impact on activities of daily living and health, combined with inconsistent communication among health care providers are significant factors that have contribute to poor healthcare for persons with SCI and other mobility impairments.
The Centre for Family Medicine Family Health Team under the leadership of Dr. Joseph Lee and the Mobility Clinic under the direction of Dr. James Milligan, have established a program aimed at supporting people with spinal cord injury (SCI) following their discharge from inpatient rehabilitation. The goal is to enable individuals with SCI to attain optimal health and wellness, so that they can participate fully in their community. In order to understand and address the factors associated with suboptimal primary care, Drs. Lee and Milligan, and their allied healthcare professional research team are conducting a number of research projects to improve understanding of the primary care needs of persons with SCI. These needs are particularly evident as people transition from tertiary rehabilitation programs.
The research explores opportunities to improve the integration and coordination of primary care and specialist care, increase capacity in primary care for optimal SCI care by better supporting care providers with up-to-date knowledge and best practices, supporting patient self-management and, perhaps most importantly, the expansion of the mobility clinic model of care to other primary care settings in Ontario.
The Centre for Family Medicine is hosting a Primary Care Summit scheduled for November 2016 in Toronto that will bringing together experts in SCI care, rehabilitation, and primary care to move forward an agenda to increase capacity for optimal primary care for persons with SCI. Ongoing research conducted by the Centre for Family Medicine (listed below) will be used to inform the Primary Care Summit meeting.
Recent and ongoing research projects include:
A study of physician perspectives on care of individuals with severe mobility impairments to identify and better understand the challenges that prevent equitable primary care to individuals with mobility impairments.
Use of a participatory action research model, to better understand and inform health services from the basis of patients’ lived experiences, through the formation of a SCI Community Advisory Committee. This committee explored topics related to greater efficiency of health services, preventive health care and self-management.
The results of a pilot test of an electronic-consultation (e-consultation) service aimed at improving the communication between primary care physicians and physiatrists generated support for this type service as an opportunity to improve physician access to expert advice and build capacity for SCI care. Future research will explore opportunities to improve this service, including use of other technological platforms.
Addressing existing challenges to accessing to SCI care, a study is currently underway to examine the feasibility of clinician utilization of personal computer video conferencing (PCVC) to increase primary care clinician capacity to improve complex chronic care and secondary complications for people with SCI and to explore patient satisfaction with the delivery of care via PCVC.
Systematic reviews have been conducted on the barriers and enablers for effective assessment/ best practice tool adoption in primary care, and comprehensive reviews of conditions similar to SCI for tools, treatment options, and overlap in treatment.
A comprehensive needs assessment, using a mixed methods approach, is being conducted with person with SCI, clinicians, and allied healthcare professionals experienced in working with persons with SCI to obtain their perceptions of the current state of care for persons with SCI, gaps in care, needs for primary care and opportunities for improvements.
Similarly, a comprehensive post-rehabilitation needs assessment is being conducted with persons with spinal cord injury to gain a more comprehensive understanding of their expectations and experiences post spinal cord injury. Persons in rehabilitation at the Spinal Cord Injury Rehabilitation Program at the (Waterloo-Wellington) Regional Rehabilitation Centre who intend to return to the region are being recruited to this longer-term study. They are interviewed just prior to their discharge with a follow-up post-discharge, and again in their home community six months later. This study focuses on capturing patient perspectives on system navigation, barriers and the enablers that lead to good health and well-being, identification of gaps and duplication in care.
In order to better understand the distribution and care of patients with SCI in various primary care practices, a chart audit is being conducted of patient profiles and health service utilization by persons with SCI. This audit is taking place in six primary care settings across the province.
Building on earlier work aimed developing a patient and physician SCI toolkit to support primary care physicians with the management of SCI, consensus from an expert panel was obtained on the essential components of care to include in the toolkit. Data collection on consumer satisfaction with the patient toolkit is ongoing. The results of this study are being used to further refine and test/ evaluate the toolkit. The patient and physician SCI toolkit will be part of a comprehensive package of primary care tools available for use by those with SCI and their primary care providers. It will be shared through a variety of venues that may include an on-line seminar and web-based repository integrated and linked with other existing resources.
As part of the process of developing an SCI model of care, a study is underway to define the ideal team compositions for mobility clinics. With input from experts in the field and representatives from allied healthcare professional associations, this study is exploring the ideal mix of skill sets and competencies for mobility clinics that provide primary care-based that is specialized to people with mobility impairments. The study will improve understanding of adaptability of the available human resources to provide this care in the primary care setting.
Given the high prevalence but under-recognition and treatment of psychological distress among those with SCI, a mental health screening program was developed aimed at increasing the identification of persons with SCI who are at risk for mental health disorders (depression, anxiety, somatoform disorder), substance abuse, and social isolation. The screening program was piloted with patients assessed within the mobility clinic to examine the feasibility and acceptability of this program within primary care. Findings from this study will be used to further refine and test/evaluate this screening program.
Accessing Primary Care for Persons with SCI
Led by Dr. Julie Richardson (McMaster University) this study undertaken at the Regional Rehabilitation Centre in Hamilton, Ontario focused on how increased collaboration and capacity-building between primary physicians and the SCI Team could improve access to primary care for people with SCI.
Individuals with spinal cord injury have difficulty accessing primary care services, not only as a result of physical barriers and negative attitudes toward disability but also because primary care providers often lack expertise related to SCI. Since individuals with SCI are at risk for secondary conditions that impact their health, it is important for family physicians to be knowledgeable about management and prevention of secondary health conditions.
Study participants participated in an interview and data collection process with led by a SCI nurse clinician in months one, nine and 24. Currently the study is in the final stages of collecting and analyzing 24 months of data and a final report will be submitted to ONF in March 2017.
Lofters A, Guilcher S, Maulkhan N, Milligan, J, Lee, J. Patients living with disabilities: The need for high-quality primary care. Canadian Family Physician. 2016;62:e457-e464.
McMillan C, Lee J, Milligan J et al. Physician perspectives on care of individuals with severe mobility impairments in primary care in Southwestern Ontario, Canada. Health and Social Care in the Community. 2016;24:463-472.
Milligan J, Lee J. Enhancing primary care for persons with spinal cord injury: More than improving physical accessibility. Journal of Spinal Cord Medicine. 2015;June 2015.
MacDonald, C. J., Milligan, J., Jeji, T., Mathias, K., Kellam, H., & Gaffney, J. (2015). Caring for persons with spinal cord injury: A mixed study evaluation of eLearning modules designed for family physicians. International Journal of Learning, Teaching, and Educational Research. 14, 39-62.
Bauman CA, Milligan JD, Patel T et al. Community-based falls prevention: lessons from an Interprofessional Mobility Clinic. Journal of the Canadian Chiropractic Association. 2014;58:300-311. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4139769/
Pritchard S, Milligan J, Lee J. Making your office accessible for patients with mobility impairments. Canadian Family Physician. 2014;60:253-254. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3952762/
Lee J, Milligan J, Hillier L, McMillan C. Evaluation of a primary care-based Mobility Clinic: Improving health care for individuals with mobility impairments in Ontario, Canada. International Journal of Disability, Community & Rehabilitation. 2014;13. http://www.ijdcr.ca/VOL13_01/articles/lee.shtml
Lee J, Milligan J, Hillier LM et al. Enhancing care for individuals with mobility impairments: Lessons learned in the implementation of a primary care-based Mobility Clinic. Healthcare Quarterly. 2013;16:49-54.
Bauman CA, Milligan JD, Lee FJ et al. Autonomic dysreflexia in spinal cord injury patients: an overview. Journal of the Canadian Chiropractic Association. 2012;56:247-250. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501908/
Milligan J, Lee J, McMillan C et al. Autonomic dysreflexia: recognizing a common serious condition in patients with spinal cord injury. Canadian Family Physician. 2012;58:831-835. http://www.cfp.ca/content/58/8/831.full.pdf+html
Led by Dr. Colla MacDonald from the University of Ottawa, this project addressed the lack of educational resources available for family physicians caring for those with SCI. Currently there are many individuals with SCI who do not have a family physician and some who have one but are not satisfied with the services they receive. On the other hand, many family physicians either have never seen an SCI patient or have few in their routine practice. This poses challenges for the physicians.
The Caring for Persons with Spinal Cord Injury is an e-learning resource, designed by ONF and the University of Ottawa, specifically for family physicians who are presently caring for, or are considering providing care for, persons with SCI in their practice. To learn more about this project, see our Best Practice Implementation page here.
Evaluation of the e-learning modules has been published:
MacDonald, C.J., Milligan J., Jeji, T., Mathias, K., Kellam, H., Gaffney, J. (2015) Caring for persons with spinal cord injury: A mixed study evaluation of eLearning modules designed for family physicians. International Journal of Learning, Teaching and Educational Research, 14(1), 39 – 62. http://ijlter.org/index.php/ijlter/issue/view/24.